03 May 2010

Cathal, unfortunately, was not too happy about being there, as you can see from the clip. Every time I spoke he got even more upset ("don't tell them Mammy...DON'T TELL THEM ANYTHING!!!"). But didn't Nan P do well

24 April 2010

has been nominated for two Webby Awards, Best Documentary Series and Best Reality. You can vote for them here. Click on the appropriate category, register to vote, and click till your hearts content. If they win, the cast get to go to New York, wouldn't that make a great episode!

09 March 2010

Two years ago today (10/03/08), our little boy was born. A few hours later, he was whisked away to Crumlin Children's hospital where he was diagnosed with having a couple of major heart conditions.

A brand new Cathal

One year ago today (10/03/09), Cathal was in ICU just 24 hours after having his big heart surgery, and things were looking a bit hairy. We did not know if he would make it through the night.

About 4 weeks after surgery

Today (10/03/10), I am glad to report that it is Cathal's birthday...HORRAY!!!! He's a big boy now, and full of big boy ideas, tantrums and laughs.

He is here, he is healthy, and he is thriving. To celebrate our boy, and to start putting together some happy memories of his birthday, we decided to hold a big birthday party for Cathal last Sunday. I would firstly like to thank everyone who came, everyone who helped set up the room and clean up, and those who helped out with food, balloons and the sound system (you all know who you are).I would also like to thank everyone who put money into the Heart Children Ireland box. Cathal already has far too many toys, and we thought that the money that is spent on birthday presents would be better used helping out other cardiac children. I know a few of you brought him a present too, and you really shouldn't have...but thank you too :-)

A grand total of 445euro & 10cent was collected on the day.....Amazing!!!!!!Again, THANK YOU

And finally,Happy Birthday Cathal

All dressed up for the party(and ready to be an emergency page boy if the need should arise)

26 February 2010

10 February 2010

Even though Cathal may not be doing that well on the gross motor side of things, his speech and communication in general are coming on leaps and bounds. We could not be happier with him. He is babbling away, he has lots of conversations that we can't understand and he tries to talk to other children (not to adults.....what he has to say is a big secret and is on a needs to know basis, grown ups don't need to know). The reason that we can't understand half of what he is saying, is because we are pretty sure he is babbling in Russian. The variety of sounds he is able to produce is incrediable.

Apart from babbling, he is imitating a huge amount. He can say "READY, STEADY, GO!", although, when it comes out of his mouth it usually sounds like "eeeddy, deeeddd, OUOUOUOU!". But he has the intonation and an approximation of the words, and that is the first step. He dosen't have any clear words yet, but we are getting close.Over the last three months, using a check list that Downs Ed have published (Vocabulary Checklists and Record Sheets: Checklist 1- First 120 words), I have realised that Cathal understands about 120 words (not all of them published on the checklist, but extra ones I've had to add), he can understand and sign 70 words, he immitates 30 words and he can spontaneously say 28 words (we are usually the only ones that understand). He still cannot say any words clearly enough for others to understand. But according to Downs Ed, on average, a child with downs syndrome will be able to learn to understand and sign or say 100 words. I think we are doing pretty well here, and I have to say, when I first ran through the check list and totted up the numbers three months ago, I was very surprised as to how much Cathal actually understood. I'm very proud of my little boy.

A few things have focused us in his speech. The first was something I read very early on in his life, from various sources. Talk, Talk, Talk.....talk about everything to your baby, describe what you are doing, what they are doing, what is around them....keep chatting. Not an easy task for me, I have to say, I tend to be more direct in my language, I get to the point quickly, and once it's said, that's it. I would be "quiet" in nature. I have learned to keep talking to Cathal though, and I hope it shows.

Speech and Language therapy is also hugely important, if only to give the parent ideas and focus. Unfortunatly, there is a huge lack of S&L therapists in this country, and not every child gets what they need. We've been lucky to be able to avail of it through Cathal's services and therapy has paid off for us.

Reading a lot! We keep a stack of books by the side of the bed, and usually while I am getting ready to get up, the Dad is reading books to Cathal in our bed. We read him a bed time story every night as part of his bed time routine (at the moment, the favourites are Where the Wild Things Are, The Very Hungry Caterpillar and Aliens Love Underpants). We label pictures, ask him to point to different characters and objects. We animate the story by screaming along with the Wild Things, or dancing around excited when the Aliens find underpants. This all helps to build understanding and it makes talking and reading a lot of fun.

Recently, we both also completed the Hanen "It takes Two to Talk" course. I cannot recommend it highly enough. It above all gives the parent the tools in facilitating the child's language development by using a few simple strategies. The one thing that really stuck out for me through the 8 week course, was how I don't give Cathal enough time to respond. Now, I count to 10, and it works. We both saw a huge leap in his communication very soon after we started the course, maybe because we knew what to look for in him.

Lamh has been another invaluable tool. He is signing more and more all the time. Especially now that we have the Lamh a song DVD. He watches it about 3-4 times a week, he knows all the songs by heart, he signs his own version of the words, and for weeks I end up staring blankly at him while he pats his tummy. I had to sit down with him to watch the entire DVD to figure out that he was signing "animal" completely incorrectly!!! When he pats his tummy now, I know he wants to sing Old Mac Donald...

So he might not be able to stand up, but he can chat till the cows come home!

A little taste of Cathal signing and singing along to his favourite DVD

Baby/ Toddler & Parent Group NEW DAY AND TIME

Every TUESDAY from 11am to 1pm, there will be a Parent and Toddler Group on the second floor, room 24 in the Carmelite Centre on Aungier Street, Dublin 2. Pop in for a chat and a cuppa!!! Just e-mail me at sylvaine.nicheallachain@gmail.com if you have any questions.

Next Meet Up: TUESDAY 21st of September 2010

Red Paint

"Do you like my painting Mammy?"

Something Very Special

Looking forward to season two

Up Coming Events!!!

Downs EDare coming to Dublin on the 7th to the 9th of October. You can register here. Register and pay before the 7th of July to receive a discount.

About Me

Cathal was born on the 10th of March 2008 to his loving and proud Mammy and Daddy. Cathal has an extra chromosome and a dodgy heart, but none of this can hold him back. Mammy and Daddy have high hopes that he will become the evil overlord of the world and his extra chromosome no. 21 will enhance his super powers.
Over the next few days/ months/ years, I hope to write about Cathal's trials and tribulations, highs and lows and my experience in raising a child with downs and heart conditions in Ireland.
I hope that this will be informative and helpful to others, and to Cathal in years to come.